Third Time’s The Charm

Well, I finally got the baby down…..after the third try.

It’s a little frustrating. Just when you think he’s asleep, he twitches and wakes himself up and WHAM…he’s not planning on going back to sleep anytime soon.

Or, you’re CERTAIN he’s asleep and you ever so carefully place him in his crib only to have him blink his eyes WIDE OPEN, the instant his skin comes in contact with his sheet.

OR…..you’ve basically crawled into the crib with him, to fake him into thinking that you’re still holding him, and you stay in that weird hunched over position so long that you’re entire back cramps up and your legs start to go numb, and you think that he’s relaxed into a deep sleep….you ever so slowly released the weight and pressure that you’ve put on him and BAM! Eyes. Open. Again!

and just when you’ve given up all hope of getting to have any free time in the evening, and you’ve basically slung him over your arm and are just ignoring him….you realize that he’s dead weight and has fallen completely soundly asleep. Based on prior track records, you have absolutely no belief that he will stay asleep, in fact you completely believe with every fiber in your body that the “INSTANT” you even make a move towards the crib, that his “sensors” will go off and he’ll wake up.

You kinda roughly plop him into his crib, kinda shove his blanket on top of him and run out of the room hoping that you can, at the very least, hit the toilet before he starts screaming and wakes up the toddler……

After about 15 minutes, you wonder what’s going on….you go in and check…all’s good, still breathing…Hmmmm weird.

Well, might as well attempt to get that snack you had been thinking about 2 hours ago…….can’t hurt to try, cause FOR SURE, he’ll be up any second.

At some point you realize that he’s actually out for the night and you’ve not accomplished what you had wanted to initially because you were basically waiting with bated breath for the little darling to wake up………and he never did. MAN!

Okay, so that’s not really what happened tonight, but it or some variation happens often enough around here for it to not be entirely funny and yet, 5th time around (I have 5 kids, just in case that reference made no sense to you) – I can appreciate it for what it is….just another season. He’ll be a better sleeper soon enough and until then, I’ll try to relax and not get too frustrated when I don’t accomplish as much as I’d like.

Jon and Geli left for the Hospital this morning just after 7:30am. She had a lumbar puncture scheduled for first thing, and was receiving chemo into her spinal fluid then; after that, she gets one dose of chemo; and then 6 hours of hydration before the THIRD DOSE of the Methotrexate.

She should be coming home on Sunday….which we are all looking forward to.

We were the best prepared and the least prepared for this third round of chemo.

We kind of know what to expect and what to prepare for. Geli was able to pack her clothes, her school stuff and her favorite foods with speed and ease. Jon packed all of his stuff up and I was left with the chaos of the other 4 kids and the house.

Xani had a bit of a “moment” last night. She couldn’t sleep. Didn’t want Jon to go away. Was Stressing. Not fun!

My big accomplishment today was to go shopping for Almond Milk, Soy Milk and Coffee Grounds. Yee Haw!

I fed the children super healthy, fresh-right-outta-the-box Chicken Noodle Soup. * snort * I win the Mother of the Year award tonight.

I think we’ll have fish and potatoes and veggies, tomorrow night, to try and make up for tonight’s amazing-ness.

I folded 2 loads of laundry today….there’s that, right?

Judah’s been having some similar issues to Josiah (when he was an infant) and I’ve gone absolute hardcore on cutting out all dairy from my diet. (There’s been some blood in his poop – in case you don’t know what I’m talking about.) It’s not fun and it’s just one more stress. I know that it’s dairy related and even just the 2 days of not eating any dairy has already made a HUGE difference. Judah’s not had any of the ezcema that Siah had, so that’s a bonus. He just tends to barf a lot, get a wicked diaper rash (I’m assuming because his “movements” are a little more acidic that they should be because he’s body is working overtime to breakdown any dairy proteins), and has had some blood tinged poop. I’m not FREAKING. We’ve had this happen before and way WAY worse. Josiah, at a health level with 0 being perfect and 10 being really bad, was at like a 14. I’d give Judah a 2….prespective….it’s all in the perspective.

But, my biggest issue and I’ve complained about it before….I LOVE CHEESE. I can find delicious dairy free chocolate. I can bake dairy free. I can cook dairy free, but…….I LOVE Old Sharp Cheese. I don’t mind some goat cheese, but if it’s too “goaty” ick! And that is the toughest thing for me about going dairy free. It’s really rough. You should all feel terribly sorry for me – I know……wah, wah, WAH!!!!!!

Ah well, I’ve gotta go and plan out my day tomorrow.

There will be a list with like 15 things that I want to accomplish….and then there will be the “List of Reality”….with the 1 or 2 things that I absolutely MUST DO!

Fun! Not!

Out for Tonight! Ciao!

A Local Recommendation

We had our ducts cleaned today.

The heating ducts in our house, to be clear and precise…..

We haven’t had them cleaned since we moved in over a year ago…..and they needed it badly. Especially with Geli and the need to be careful with her health. Seeing as we are starting to run our heater more, we figured that it needed to happen and fairly quickly. We ended up calling a property manager friend of ours and he recommended that we use “his guy” and honestly, we are thrilled that we did.

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The sunshine was so amazing today!

We had called two other companies before we got the recommendation. Both companies were booking at least two weeks ahead and their prices were ridiculous.

We left a message for Pavan from Lower Mainland Carpet and Furniture Cleaning and he called us back right away. And, he was able to come the next day. AND…He gave us an amazing price.

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When these guys came, they were friendly, and totally professional. They were careful with their shoes and with their hoses and our walls. They went through each room thoroughly and when furniture needed to be moved, it was moved carefully and put right back into place.

It was interesting to hear the different items traveling through their hose as they sucked all the dust and “stuff” out of our ducts.

When they were finished, they did a walk through to make sure that the covers were all back in place and that everything was as it should be.

Just before they left, we asked if we could get their picture and if we could mention them here. I love it when we get a recommendation for a service that you need and so I’m passing the recommendation along.

We don’t get anything for mentioning them, I just wanted to promote a small business with great service for great value. I have no idea how their carpet and furniture cleaning skills are, but if they have the same work ethic and attention to detail as they did today, you wouldn’t be disappointed.

So, if you’re needing to get your ducts cleaned and you live in the Lower Mainland/Fraser Valley give these guys a call.

Fighting To Win

I’ve been asked this question or a variation of it a few times….and so I thought that I’d answer it here, as I’m sure that someone else has wondered about this too.

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Angelica’s immune system is currently suppressed. Normally, (like for you or I) we have a certain number of blood cells in our body that have specific jobs. Think of the different blood cells as soldiers. Some help to fight off viruses and bacteria, some remember which bacteria and viruses you have come up against in the past and what the best strategy was to defeat them…..and there are a bunch more.

You and I have tons of big strong healthy good soldiers and new, strong healthy soldiers are always joining and learning from the older, wiser, more mature soldiers. Normally when something bad tries to get inside of you, the good guys identify it as a bad guy and then they work to destroy it and they win and all is well inside the world that is you. But sometimes, a zombie gets in with the healthy guys and these zombies….they are sneaky. They can manage to sneak past all the fighter soldiers and then when you’re not looking…..BAM….they bite you, and now your one zombie is now two zombies and then they multiply rapidly from there….

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This is what happened with Geli and by the time they diagnosed her, her bone marrow was filled with 85-90% cancer cells. The cancer cells (zombies) had destroyed most of her good cells. Without treatment, the prognosis is death….it progresses quite rapidly once the concentration reaches that stage.

BUT…..right now, they have killed all the cancer zombies that they could find and at the last Bone Marrow Biopsy, Angelica’s bone marrow had about 25% good healthy cells. Not bad considering that they basically dropped an Atomic Bomb (of Chemotherapy) on her and nuked everything good and bad.

This is the extremely condensed and much simplified version.

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So because she is continually on Chemotherapy (and will be on the Intense Side of Chemo treatment for the next 27 weeks or so and then she’ll be on Maintenance which is a lower dose treatment until October 2012) she doesn’t have a lot of soldiers. Some times she has more and some times she has less, but to put it into perspective…..Angelica is allowed to go to school when she has a minimum of 500 soldiers. The low end of normal is 4600 soldiers and the high end of normal is 10,800.

As you can see there is quite a difference between having 500 soldiers or having 5,000 soldiers….now add into that that lots of the time, the “soldiers” that are working for Geli are young, immature or weak soldiers and it just all gets messy doesn’t it?

This is why we are trying to be careful with her and who she comes into contact with.

It basically comes down to calculated risks.

It’s important to us that she be allowed to do “typical” things that will help her spirits to feel positive and uplifted. Depression is a horrible thing that no one wants to have to deal with. To have to fight through depression on top of fighting off cancer….really, really REALLY SUPER NOT COOL! And so, we let her go to school. We encourage her to connect with her friends. We let her try to be a “normal” teenager doing “normal” teenage things when the reality can be so far from normal. We pray that she doesn’t get sick. We tell her to avoid sick people as much as she can. We give her “Purell” to wash her hands lots and we tell her to take any and all precautions that she can and that she remembers to……while trying to be as normal as possible…..while bald….and tired……and out of breath……and add on top of that that she’s not “really” attending school. Some days, it’s just one class and even when she goes, she’s basically allowed to audit the classes and she can receive material from the teachers, but every things has to be handed in to her “homebound teacher” who she meets with one a week (hopefully) at home! It’s not normal, but if she can go to school, be with her friends and forget about not feeling well, or being tired, or having to go into the hospital….if she can forget about the chemo and the cancer, and how hard it is sometimes…..even for just a moment, then it makes it all worth it. All the stress and worry and concern that we might feel about “exposing” her to “all the crap out there” is nothing compared her forgetting about it all and “just being normal.”

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Most of the rest of the time, we avoid crowds and crowded areas. Everyone in our family does, as much as possible. We spend most of our time, at home or outside away from people. To do things like shopping or even going out for a meal, we attempt to go at “down” times. For example, I try to shop early in the morning so that the stores have relatively few people and even at that….if someone is coming towards me down an aisle and they are coughing and hacking and look like death warmed over – I will actually leave that aisle and come back to it later. It’s not worth it for me to risk that I or Judah or Siah might get sick and bring it home to Geli.

It’s not always easy or the most convenient, but aside from school, we are doing what we can to avoid illness over here.

For whatever reason, her counts this round have been pretty good and she’s stayed up over the 500 mark, so far. This is amazing and we are so thankful for it. The next round is a mini repeat of the very first round that she went through and that one decimated her “soldiers” down so low that they could no longer count them….below 50 they can’t count them and it’s basically considered at that point that she has pretty much “no” protection.

So, we continue to pray that she remains healthy and we carry on.

So, in answer to some of the questions out there, no, we are not participating in “normal” activities aside from Geli being allowed to go to school sometimes. Xandra and Jeremy do go to school and their classes have been talked to about being extra super careful with colds and coughs. Sometimes, rarely, the older two kids have gone to church, but we’re not taking Geli or the youngest boys….and even with all of our being careful, Josiah has managed to pick up two colds over the past 2 months. There are no Mom’s Groups or preschool or library events, no public pool swimming, no fun play places, and no group activities.

We have done two family events but polled the family to see if anyone was sick and fortunately…..everyone was healthy or else we would not have been able to go.

This is a season…not a fun season and sometimes it’s a lonely season. It’s most definitely a tired and emotional season, but it’s a season, none the less and…….SEASONS CHANGE!

Yes, this is a pretty long season, but in the grand scheme of life, it’s one year (or 2.5 years in total) out of 100! (That’s a post for another day, but I plan to live to 100 years old, at least!) It is staring us in the face right now, and sometimes it even feels like we’re being screamed at, but one day we’ll look back and this will just be a blip on the radar of our lives.

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Until then, we make the very best decisions that we can. We hold onto hope. We look for joy. We pray for health and strength and peace. We live. This is the year that we fight, with everything in us, for life, for Angelica’s life…

…and WE WILL WIN!

Siah Safe

Anyone who knows me, knows that I love to cook and bake. Often it’s a challenge to work with Siah’s Allergies and “the way we eat” and come up with food that looks and tastes as delicious as “regular, normal” food. It’s regular and normal for us, but I’d like to be able to serve it to you and have you not notice the difference. I also don’t want to always have to give Siah something different from the rest of us. It’s important to me that he understands that he needs to be careful when he goes out, but that here in our home, he never has to worry or feel “different” or “strange”. It’s a challenge that I’m usually up to, but in the past few months, I’ve not done a ton of baking and I’ve mostly stuck to our regular go-to meals.

But recently, I’ve been thinking about Chicken Lasagna.

My Aunty Lori makes an amazing Chicken Lasagna. Although I’ve never had “her” Chicken Lasagna, my dad had “her” lasagna (when visiting them in the Great White North – they live in the boonies.) and loved it so much that he asked her for the recipe. He’s made it a few times and MMMMmmmmmm – YUMMY! It’s a Tomatoe based Lasagna.

I asked for the recipe a bit ago and my mom even printed it off for me, but the paper got wet and then Siah destroyed it…so I still need to get it, because it’s one of Geli’s favorites and apparently, I “wreck” my lasagnas because I put too many veggies into them.

I’ve also tried a few times to make a White Cheese Sauce based Chicken Lasagna, but according to my kids…..I’ve had some “interesting” but not horrible results and yet nothing that was FABULOUS – until yesterday…….

Hungry

I made a lasagna yesterday “based” on this recipe….with substitutions and additions, of course.

With the dietary restrictions and lifestyle choices that we have/have made, I pretty much “always” alter recipes and mostly, I have pretty great results. In this recipe, I use brown rice lasagna noodles, vegan Becel for the butter, Spelt Flour, Soy Milk, Goat Mozzarella, a hard Sheep Cheese for the Parmesan, Cheuvre for the Ricotta, and just because I know my kids preferences, I used carrots and zucchini instead of spinach. It was sooo YUMMY!

Cheesy Chicken Lasagna

I love it when I find a “traditional meal” that I can alter to fit in with the allergies and intolerances within our family. In fact, It was yummy enough that I bet I could have fed it to you and you’d have never known it was “different” or “altered”.

You can’t very well have a delicious meal like that without dessert, can you?

Well, we don’t hardly EVER have dessert, but we do like snacks. This past week, a wonderful lady brought us a meal and included with the meal were the most amazing double Chocolate Chip Cookies. Like a pig, I devoured We finished what was brought, and then they were so delicious that I we wanted more.

I’m not sure if the cookies we were given were dairy and egg free, BUT…..no worries because they never lasted long enough for Siah to know that they were even in the house I found a recipe and made some unbelievably delicious Double Chocolate Chip Cookies that even Siah can eat.

Again, with the substitutes….I used Spelt Flour, Vegan Becel, Ener-G Egg Replacer, and President’s Choice Semi-Sweet Chocolate Chipits (these chipits have no dairy. MMMmmm). These are AMAZING!

Double Chocolate Cookies

There is no way that these could be considered “healthy”, but at the very least, they won’t upset our tummies, and Siah can eat them without us worrying about his allergies.

Float like a Butterfly, Sting like a…

…..wasp?!?

When Josiah split his head open in the beginning of September, Jeremy was upset. SO UPSET!!!!

Like WAY MORE upset than he ever should have been. He was bothered enough that based on his reaction, you might have thought that he was responsible for the accident; except that Jon was right there when it happened and Jeremy had nothing to do with it.

The biggest thing that he kept talking and stressing about was the possibility that Siah might need stitches. I couldn’t quite figure out why the idea of stitches was such a problem for him. He was “in tears” over the whole thing and it just seemed so over the top to me. He had just had 3 stitches placed in his chin in July when he tripped and banged his chin and he had acted so calm, cool and collected about the whole ordeal. He had taken it all in stride, never freaking out or making a big deal about it.

We have an older camera that Jeremy LOVES to take pictures with and I recently downloaded all the pictures and videos that he and we have taken on that camera. In among everything, I found this little clip. It totally explains his reaction and is way too good to keep to myself. It’s classic Jeremy. I love my little man!

Stolen Moments

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The day that Geli was scheduled to start this current phase of treatment, the oncology clinic was slammed with too any cases and to try to squeeze Geli in would have caused some issues and so they bumped her treatment for one day.

Jon called me that morning to let me know that they were kicking Geli out on a day pass. In about 5 minutes, we had decided to yank the kids from school and come in for the day.

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The kids were SO excited to be going in to see Geli and Jon. Because the kids had been sick with coughs and colds, we’d not seen Jon or Geli in almost 2 weeks and it was tough on all of us.

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We made it in to the hospital just after noon and Geli had until 4pm before she needed to be back at the hospital for her next dose of antibiotics. We went to Red Robin’s for lunch and after we headed down to Granville Island.

We went to the Kidzone area in Granville Island and the kids had a blast.

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They LOVE the skeeball game……and Geli had fun showing/helping Siah to play.

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I walked around holding the baby and snapping pictures and just enjoying my family enjoying each other.

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There were lots of laughs and lots of smiles and the kids seemed genuinely happy to see each other. They all played SO well together.

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Jon got the opportunity for some extra snuggles. It’s been extra hard with everything that’s going on because Jon has missed out on so much of Judah’s early days…..

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The kids played and played and played some more….

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And then counted up their tickets that they won. They pooled all the tickets together. Geli and Xandra let Jeremy get something with all their tickets. This was very generous of them.

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Josiah found the dancing game and he didn’t even need the game turned on to bust a few moves…

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He hasn’t quite grasped the concept of “playing” an actual game…he “thinks” he is playing the game, even with no tokens…

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My Sweet Boy…..with the Frankenstein stitches in his head….AWESOME!

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We made it back to the hospital in time and Geli got her drugs hooked up. After her drugs ran, she was headed out again to the Teen Group. The oncology department has a monthly teen event for the kids to be able to connect with other kids who are going through what they are going through and it’s been a good thing for Geli. She was unsure if she really wanted to go and was feeling a bit insecure, but she did go and had a GREAT TIME! (They went “glow-in-the-dark bowling and it was so cool!)

The kids and I stayed to hang out with Jon for an extra 2 hours…

We stopped at Safeway to pick up some food for dinner and headed to a nearby park. Judah screamed the whole way there. Just keeping it real for his dad….he HATES his car seat and does this just about every time he’s put in it.

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The kids swung on tire swings….

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….played on the toys….

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……slept……

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and Josiah climbed so high on the climbing toys and freaked us right out. That little boy is part Mountain Goat. He managed to scale the toys up and down multiple times without any issue and he was definitely higher than either Jon or I were comfortable with…and then……….. then he tripped over a piece of wood that was laying on the ground….how does that work out???

It started to get colder as the sun went down and I wrapped Judah up like a burrito….only it required two blankets as he’s so big….so I guess it was a REALLY BIG Burrito?!?

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Pretty soon it was time to go home and the sadness set in along with the reality that we were going home and Daddy had to stay with Geli.

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There were tears and hugs…..

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and even kisses….

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And we headed home. Our hearts a little fuller from a day spent together. A day that we did not expect to get and yet a day that was a gift. Those stolen moments are so precious and are the things that fuel you and help you to carry on when things seems so difficult and “off”.

You can see all the pics, if you want, here…..

So…….Hey!

Well, it’s been a while since I’ve posted anything….things have just been so crazy busy around here and I’ve really not had much of any time to sit and I’ve only recently gotten my computer back.

Since Jon decided to see if his computer would survive a trip into Vancouver on the top of the van (it didn’t), he’s been stealing mine when he goes into the hospital and when he goes into work. This, most decidedly, makes me grumpy. I like my computer. I want my computer, but I’ll grudgingly admit that he needs to work and so……mumble, mumble, mumble……

Things are so busy around here and like Jon mentioned it’s not always easy. I mean, if you look at it big picture, Geli is flying through this phase comparatively, but because of the weeks of feeling crappy on top of feeling crappy 2 weeks ago after the first massive dose of chemo…..all she can see and feel and sense is the right here and right now.

I actually yelled at her last night in an effort to cut through the fog and misery that she was feeling. She starts to feel better starting today. She’s not gonna feel perfect today, barring a miracle, but she should start to feel better today and then as each day passes, she should progressively feel better and better and better.

She’s been so focused on how she’s feeling and it just runs into the LOOOOOONG string of days that she’s not been feeling well and all she could see was here and now. I yelled at her that she needed to understand that today was probably the “worst” that she was gonna feel and compared to 2 weeks ago….she’s not barfed ONCE this week. She has gagged twice. At this time 2 weeks ago, she had barfed multiple times on Tues, Wed, Thurs and Fri…..mostly because she got so low and not eating.

Once she was listening to me and really hearing what I was saying, I asked her if she could power through the rest of the evening knowing that she just needed to make it through the rest of the day and that the next day would be a better day, and somehow, something triggered. I had mentioned that we were looking for highest number of calories in the least amount of food and her eyes light up….could she have some ice cream? Of course, she could have ice cream….but I bribed her that she’d need to eat one ham sandwich before she got any ice cream and VOILA…..just like that our entire evening changed from her feeling hopeless to her “getting it” that the way that she was feeling was not a long term thing and that if she could just stick it out a little longer that she’d be over the hump and headed into happy town…….

This is probably once of the hardest parts for me….she’s a little girl and a young lady all rolled into one body. Sometimes, she knows and “gets it” and sometimes it’s just too overwhelming. Even I don’t always make the wise choices in my life and I’m supposed to be a mature adult……I can’t expect her to get it always either, but when she does “get it”, it makes things so much easier on all of us. But to know that if she just did “this” that it would make this other thing easier or better for her, is hard. I don’t want to see her hurting. This whole thing is hard. I hate pushing her but I hate seeing her hurt even more.

I wish there were easy answers

We’ve made it through the second dose of the high-dose chemo for this phase. We have two more doses to go. Angelica is getting almost 5 litres of chemo over 24 hours and then getting it flushed out for the next 48 hours and then sent home to recover. The dose they give is expected to be too high for 70% of the kids that they give it to (as in the side effects are so severe that they can’t take the full dose and need to have it reduced). Of the 30% that can take the dose at full strength, it normally takes a lot longer than 48 hours to flush it down to below the desired level. Nobody clears it in less than 48… except Angelica. She clears in 36 hours or less, which is not in any way normal. We repeat this schedule once every two weeks, so three days in the hospital and ten – eleven days at home.

All of this means that we don’t have to stay in the hospital any longer than necessary, which is very good. But it doesn’t mean that we get off scott-free. The massive dose of chemo does take its toll on the body and and the first week of being at home is rough. For Angelica, everything tastes off or bad, so nothing gets eaten. An empty stomach hurts and makes her feel weak and nauseous. And if she is not really diligent, then she ends up with not enough calories going in and starting to feel really sick and low blood sugar and emotionally drained and that just starts to be a big deep hole.

Then we end up with scenarios like last night where Patti and I are sitting up late at night with her forcing her to eat food, while she cries and sobs, and for a dad, that is really hard to see and have to do. I am sure it is even harder for her. This morning she woke up feeling a bit better which we knew would happen, but its all really hard.

Angelica acts at times like a mature kid who can carry a lot of this on her shoulders like its not that big of a deal, but she is just 13 and that shows through a lot too. I get the picture of standing on a nail and having it hurt, and the pain is almost tolerable while I stand there on the nail, but it will feel a lot better when I get the nail out of my foot, but removing it hurts a lot immediately. Angelica feels off and as long as she doesn’t do anything it is almost bearable, but if she stays there too long then it will only get worse. Making herself eat seems like the worse option except she will feel better when she does. She has the intelligence to understand this but not the maturity yet to avoid going down into the pit of helpless agony. No 13 year old should ever have to have that maturity!!!

Yet, this is where we are. We are happy to be home and to be able to do this as a family. We are thankful that Angelica is having very little in the way of side effects from this chemo. Yet we are finding it difficult to know how to steer her through this; how much to force her, how much to allow her to choose, how much to explain, how much to tolerate. I wish there were easy answers to these questions.

Thanks to everyone for your prayers and support.

Jon

Rockin’ and Rollin’

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He’s looking at his froggy, that you can’t see in this picture.

Guess who has learned to roll over?

Yup, my baby is rolling over. I think that his weight gives him an edge and a disadvantage. If he gets started rolling over, then as long as he can swing his massive thighs over, the rest of him follows. But……his huge head and chubby cheeks are too heavy for his little neck and he can’t hold his head up for very long.

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But isn’t he cute?

This video is from October 1st on his third attempt at rolling over (He did it once the day before). You even get to hear me sounding goofy and talking in a high squeeky baby voice…..oh come on…it’s not like you’ve never done it either…and you’d think that I would have known that it wouldn’t be a good idea to “cluck” within inches of the camera….but nope…..that’s in there too and I didn’t even bother to try again. This is the real deal, baby!

ps. please excuse the abrupt ending. I’m, quite obviously, am not an expert videographer.

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He’s so SO sweet, isn’t he?

Day 15

Geli has been admitted to the hospital again for the second dose of this cycle’s chemotherapy.

The first dose went absolutely as well as it possibly could have gone while she was in the hospital.

The way this round of chemo works is that Angelica is getting 3 different types of chemo for the 9 weeks of this cycle. One she takes every day by pill. The other two she gets once every two weeks. One she gets over 15 minutes through her IV port in her chest and the third one is a High Dose drug that is given over a 24 hour period.

Geli had been so sick for the two weeks leading up to the start of this cycle and had only just started to feel slightly better when we had to start this cycle. We really weren’t sure what to expect and the thing that everyone had been “freaking about” were the mouth sores. Considering that Gel hadn’t been eating really much of anything and had ended up getting a feeding tube, we really didn’t know what we were getting into. Often the fear of the unknown is WAY WORSE than what actually ends up happening.

Geli started the Chemo on a Thursday and the best case scenario was that the chemo would flush out of her system and that she’d get to come home on the Sunday. They give her the high dose over a 24 hour period and then they give the antidote to the chemo, because if it was allowed to continue on in her body, it would kill her. They they flush her system and wait until the concentration of the chemo drug in her body is down below a certain level. Imagine our surprise when they informed us that she was able to go…..on Sunday. What was even more amazing was that she was feeling pretty good considering how poorly she had been feeling.

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This was right after the tube had been placed.
She was so hungry and was so looking forward to not feeling like she was starving.
At this point she hadn’t eaten in 4-5 days.

I was a little nervous because she had the feeding tube in and now we had to deal with all of the fun that brings, only at home…..which meant that we were responsibly for it all. AAAAAWWWKKK! Basically we were feeding her meal replacement shakes or formula. But, we were so excited that she was doing well(ish) and that she had cleared the chemo in a great time.

She did end up getting some mouth sores right all around the inside edges of her lips and they hurt pretty bad. Like she wouldn’t drink from a glass because it hurt that bad. She was using a syringe to shoot water into her mouth. It’s not a fun thing to deal with and yet, she is such a trooper.

And then on Tuesday night, in the middle of the night, she started barfing. We finally got her anti-nausea meds back on board and by Friday morning she was starting to feel better again.

The worse part was on Thursday. She managed to barf up her feeding tube. And I put it back in. I was freaking and panicking on the inside but on the outside I acted so calm and like it was no big deal…….I routinely place feeding tubes up my children’s noses and down their throats and into their stomachs. And, if it weren’t bad enough to just do it the once…..she managed to throw the tube of twice more that day. Once in the evening and then again in the middle of the night…..After the third time, she said enough was enough and that we’d think about it some more in the morning….this of course freaked me out because she still wasn’t eating anything or drinking anything and obviously was still barfing.

But then, she woke up on Friday morning, and between the anti-nausea meds and whatever ever else was working…..she was feeling a bit better. Not up to par, but definitely better. And so we left the tube out and I tried not to panic about what she wasn’t eating and drinking and so desperately tried to focus on what she was eating and drinking….which was precious little, but compared to the past few days was HUGE!

Every day since then she has gotten better and at this point, for the past 3-4 days, she is feeling the best that she’s felt in almost 3 months. And even now, she’s still not “normal” just WAY better than she has been.

And so our plan going into today is to get through the next 4 days of treatment and hopefully be able to come home on Sunday. We are doing ALL we can to minimize the mouth sores and will start the anti-nausea meds on Monday or Tuesday in the hopes of avoiding the icky feeling and vomiting.

If you are looking for things to be praying for, please pray
1) that there will be no mouth sores this time around.
2) that Geli will continue to feel stronger and better and that she won’t end up getting sick
3) that her weight would continue to rise (she lost more than 15 pounds)
4) that all of us would remain healthy
5) that peace would reign in our hearts and in the home
6) that Jon and Geli would have some great “moments” in the hospital
7) that the kids and I would have some great “moments” together at home
8) that everyone would get great rest….sleep is often elusive around here these days

I’m sure that as soon as I post this, that I’ll remember something else…..Oh well, if I do – I’ll just add it later.

Thanks so much for your love and support. I cannot fully explain just how appreciative we are of all of you.

Thank You!